Preparing, Planning and Evaluating....
After two relatively good weeks Friday hit me...like a bus!! The colour drained from my face, my legs got heavy, everything had that dead dull heavy ache and my brain and legs seemed slightly out of sync at times making me wonder if I would stumble or fall. I have come to accept that this is the merry-go-round I am on and whilst I enjoy the good weeks (as infrequent as they are becoming) I am also not surprised when the impact of my symptoms hit me once again....usually after I have allowed myself to move my activities beyond the minimal level I have become accustomed to in order to control the symptoms as best I can!
Sunday, I was Godmother for my best friend's Daughter; Nicki is the most amazingly wonderful friend who has supported me beyond anything I could wish for and whilst I was honored to be asked to be Godmother...I was dreading it! Standing in front of 125 people would get me anxious at the best of times but looking the way I do with my lop-sided face just added to my anxiety! Since I had been feeling okay, I opted to wear heels for only the second time in 7 months which was a huge mistake!! I walked the 30 second walk to the church from my house, stood for around 10 minutes before being seated at the church, after a short introduction I stood for another 5 minutes and it started....my right thigh (my right is generally my weaker side) began to shake and I locked my left knee as my right struggled. By the time the first 10 minute section was done and we had walked (well, I more limped!) to the font, my whole body shook with the vibrations from my thigh as I struggled to keep it straight! One of the other Godmothers kindly linked my arm and whispered "If you go, I'll go with you" and I was so grateful!! Thank fully I made it back to be seated with her help and took off my heels of which helped slightly but I spent the rest of the day seated where possible and limping the rest! By evening my buttock felt like I had done a million squats! My pelvis and hip ached and my thighs felt very sore....and today is not much better!! To think that one hour of intermittent standing and no more than 50 steps could have that impact on someone who 7 months ago would think nothing of doing 2500 steps on a stepping machine at least 3 times a week is shocking!! I think I'll stick to flats for the foreseeable future!!
One strange thing I am noticing more and more is that my anxiety, which I have struggled with since this all started 9 years ago, and more accurately - since the Doctors told me this was all in my head and I began to believe my symptoms (feeling weak, odd vision, droopiness, fatigueability etc) were all in my head, has actually dramatically improved during this flare up of my symptoms! It is strange how I mentally feel stronger while facing this again when this illness coming back has been my biggest fear since it slowly regressed last time! I felt absolutely fine yesterday in the church, beside my legs (!) and so whilst this illness is hard to deal with....I am also strangely grateful that it has come back as I finally KNOW that whatever it is, it is in no way my fault, I am not depressed and I actually now believe my anxiety has been due to me reacting and to my symptoms causing me to panic as I believed they couldn't be there/real and that I was making them happen psychologically!!
My nerve/muscle tests are on Monday and I will finally know (hopefully!) if MG is my answer to all of this. I have to remind myself that I am not diagnosed, but as I have said before, I believe that one day a test will prove it but accept the current testing may not be reliable enough to do that. I have decided to have a couple of hot baths this week and try some walking over the weekend. I have read the preparation notes for SFEMG and will be avoiding Caffeine the day before and making sure the car is well heated on the way!! To be honest my face is pretty consistently symptomatic - the degree of the droop fluctuates but it is always there on some level so I am hopeful the tests will finally see what is going on to cause this! They have said they are going to test my face which is great as I cannot hold a wrinkle on my nose for long even if the droop isn't too bad and also the twitching kicks in pretty quickly at most times of the day...sometimes instantly other times after a few short minutes so I will be sure to talk lots on the way and in the waiting room as I typically have the 8am appointment! I'm also wondering about taking a hot water bottle for the journey to put on my face....is this a step too far!! lol!!
It is strange to be this close to the tests after waiting so long - I find myself analyzing my symptoms (and clogging up the discussion boards here!) with my weird vision and chest problems. I also ask myself what I really want, do I REALLY want this to be my diagnosis? I think the scariest outcome for me would be to walk out of there with no diagnosis, yet again not knowing what is wrong or why it is happening, I have to understand, and that really is the hardest thing for me right now. But then I think beyond that, beyond the massive relief a diagnosis would bring and the chance at finally having some treatment that just might help and give me some of my life back and I wonder if I am really prepared for that and everything that comes with the treatments....even if I find one that works for me!! And then other people pop into my head....all those people who believe the Doctors (by this I mean my Mother's small minded family who have written me off as there being nothing wrong with me!) it would be so good to finally have my symptoms validated but I feel guilty for this playing a factor in me wanting a diagnosis...what a silly reason to have!!! But then there's my wonderful Boyfriend, my beautiful Girls and my family (the ones who do believe me) and my friends (the ones who still bother and haven't scurried off bored now I am no use to them!) I want a diagnosis and some treatment for them as much as myself, so that I can be the old Eve again (or at least somewhere nearer than I am now!) I worry how long my friendships and relationships will last if things remain like this....I lost a few last time! And I really don't know how I would deal with having to tell them there is no answer, or no reason for any of this....and worst of all - have some of them maybe start to think this is all in my head....
Sunday, I was Godmother for my best friend's Daughter; Nicki is the most amazingly wonderful friend who has supported me beyond anything I could wish for and whilst I was honored to be asked to be Godmother...I was dreading it! Standing in front of 125 people would get me anxious at the best of times but looking the way I do with my lop-sided face just added to my anxiety! Since I had been feeling okay, I opted to wear heels for only the second time in 7 months which was a huge mistake!! I walked the 30 second walk to the church from my house, stood for around 10 minutes before being seated at the church, after a short introduction I stood for another 5 minutes and it started....my right thigh (my right is generally my weaker side) began to shake and I locked my left knee as my right struggled. By the time the first 10 minute section was done and we had walked (well, I more limped!) to the font, my whole body shook with the vibrations from my thigh as I struggled to keep it straight! One of the other Godmothers kindly linked my arm and whispered "If you go, I'll go with you" and I was so grateful!! Thank fully I made it back to be seated with her help and took off my heels of which helped slightly but I spent the rest of the day seated where possible and limping the rest! By evening my buttock felt like I had done a million squats! My pelvis and hip ached and my thighs felt very sore....and today is not much better!! To think that one hour of intermittent standing and no more than 50 steps could have that impact on someone who 7 months ago would think nothing of doing 2500 steps on a stepping machine at least 3 times a week is shocking!! I think I'll stick to flats for the foreseeable future!!
One strange thing I am noticing more and more is that my anxiety, which I have struggled with since this all started 9 years ago, and more accurately - since the Doctors told me this was all in my head and I began to believe my symptoms (feeling weak, odd vision, droopiness, fatigueability etc) were all in my head, has actually dramatically improved during this flare up of my symptoms! It is strange how I mentally feel stronger while facing this again when this illness coming back has been my biggest fear since it slowly regressed last time! I felt absolutely fine yesterday in the church, beside my legs (!) and so whilst this illness is hard to deal with....I am also strangely grateful that it has come back as I finally KNOW that whatever it is, it is in no way my fault, I am not depressed and I actually now believe my anxiety has been due to me reacting and to my symptoms causing me to panic as I believed they couldn't be there/real and that I was making them happen psychologically!!
My nerve/muscle tests are on Monday and I will finally know (hopefully!) if MG is my answer to all of this. I have to remind myself that I am not diagnosed, but as I have said before, I believe that one day a test will prove it but accept the current testing may not be reliable enough to do that. I have decided to have a couple of hot baths this week and try some walking over the weekend. I have read the preparation notes for SFEMG and will be avoiding Caffeine the day before and making sure the car is well heated on the way!! To be honest my face is pretty consistently symptomatic - the degree of the droop fluctuates but it is always there on some level so I am hopeful the tests will finally see what is going on to cause this! They have said they are going to test my face which is great as I cannot hold a wrinkle on my nose for long even if the droop isn't too bad and also the twitching kicks in pretty quickly at most times of the day...sometimes instantly other times after a few short minutes so I will be sure to talk lots on the way and in the waiting room as I typically have the 8am appointment! I'm also wondering about taking a hot water bottle for the journey to put on my face....is this a step too far!! lol!!
It is strange to be this close to the tests after waiting so long - I find myself analyzing my symptoms (and clogging up the discussion boards here!) with my weird vision and chest problems. I also ask myself what I really want, do I REALLY want this to be my diagnosis? I think the scariest outcome for me would be to walk out of there with no diagnosis, yet again not knowing what is wrong or why it is happening, I have to understand, and that really is the hardest thing for me right now. But then I think beyond that, beyond the massive relief a diagnosis would bring and the chance at finally having some treatment that just might help and give me some of my life back and I wonder if I am really prepared for that and everything that comes with the treatments....even if I find one that works for me!! And then other people pop into my head....all those people who believe the Doctors (by this I mean my Mother's small minded family who have written me off as there being nothing wrong with me!) it would be so good to finally have my symptoms validated but I feel guilty for this playing a factor in me wanting a diagnosis...what a silly reason to have!!! But then there's my wonderful Boyfriend, my beautiful Girls and my family (the ones who do believe me) and my friends (the ones who still bother and haven't scurried off bored now I am no use to them!) I want a diagnosis and some treatment for them as much as myself, so that I can be the old Eve again (or at least somewhere nearer than I am now!) I worry how long my friendships and relationships will last if things remain like this....I lost a few last time! And I really don't know how I would deal with having to tell them there is no answer, or no reason for any of this....and worst of all - have some of them maybe start to think this is all in my head....
Replies
My neuro nurse really stood behind me when I said I was sad because I lost everything and did not have symptoms because I was depressed. Likewise I told her, my body\'s unpredictable nature made be anxious and not the other way around. I am sure she has witnessed plenty. Having confidence in your perception of your own situation is everything.
I guess they used to diagnose MS by watching a patient\'s response to a hit bath, so a hot bath before the test can only be your friend.
In the end, what I hope for has always been an accurate diagnosis, because successful treatment depends on it. Hoping for you the knowledge needed to proceed towards health.
Thank you Elinora :) You are right - an accurate diagnosis is the only real solution, the last thing I want is steroids etc when they are not going to help.....but I am so scared of being left like this with no help....I just wish they would find something that they can treat so I can have a name for it, understand/come to terms with it and hopefully a chance to feel better? I am sure I have no need to tell you this with what you are going through right now!!
It baffles me why they don\'t have a 24hr observation for these fluctuating illness so that they can accurately assess the symptoms and how/why they increase and decrease. The hot bath observation could be used etc?! I already know the answer....money and funding would not allow it but it might give us more complex/less typical cases a chance!!
Wishing you lots of luck and better days.x
I think trying to explain How we feel and trying to get others to understand it is one of the most difficult parts of having MG. I am sorry that you were so symptomatic at church. If it helps- I understand. Love and friendship Barbel
Anything you can do beforehand, to raise the internal temperature of your muscles, and to raise the use of your neuromuscular system - will help you.
Take a jog, if you can do it?
Postpone any meds, well before the test.
But be prepared to crunch your meds right down, after the test.
Too bad you couldn\'t have walked - right from the christening - and into the Neuro\'s test lab.
- Ross
Eve, I understand your feelings and I have not been struggling as long as you have. An accurate diagnosis and validation are both vital for many reasons.
You have a strong support here. Wishing you an accurate diagnosis.
Babette
Eve,
Your struggles is so relatable to us all, I call it MG sneak attacks! It sounds like you are all prepared, we are all here for you. Praying the doctors eyes are wide open to provide a dagnosis.
Hugs,
Annette
I\'m glad someone was close to hold you up at the service. We\'re here to do the same.
larissa ; )
Thank you Barbel :) you always reassure and comfort me with your posts.x
Snowbeltfolkie - I wish I could have gone straight there too! What\'s the betting I\'m fine next Monday for my appointment?! Thank you for your advice - its a 2 and a half hour drive but hopefully there will be time for a brisk walk before I go in!x
Babette - Thank you! You also write the loveliest posts :)
Annette...sneak attacks is a good one! Thank you for you prayers and support - it really means a lot.x
Larissa - Thank you! I am so grateful to you have met you all!!
Thanks again everyone!xxx
I remember that feeling, of wanting a diagnosis just so I could have answers and validation, but also wishing that I didn\'t need a diagnosis because it was nothing and would go away on it\'s own! I finally settled on, \"Please just don\'t let it be ALS\"...so I guess I got my wish. :) I\'m glad you feel more confident to believe in your own experience, don\'t listen to anyone who says it\'s all in your head.
I hope your doctor is able to see what\'s going on and help you out on Monday! And, triggering your symptoms with a heat or anything else is all fair game. (Within reason! Not so much that you can\'t walk out of there, of course.)
Also, I used to love wearing heels, but now all those shoes are sitting in my closet collecting dust...between the terrible balance, slightly weak legs and occasionally dragging feet, I\'m scared to risk falling. Oh well.
Thank you vieve....that is exactly how I feel!! It just doesn\'t seem to be going anywhere or getting better on its own and it scares me to think there may no answer or chance of treatment to get better.i really hope Monday brings answers but I am not hopeful given my previous experiences... I almost can\'t let myself hope or set myself up for that fall?
My shoe collection is also banished to the wardrobe....sometimes it\'s the small things like that which sometimes remind you of how far you are from your old life?? Maybe one day we will both dance in heels again...I will keep everything crossed for us both!!x
I hope that for both of us too...looking forward to that day! :) And keep us posted on what happens Monday.
Wishing you much luck on your testing. (That sounds crazy but you know what I mean...you need a diagnosis)
Hang in there. I am sorry you are going through this. I am glad you have a great support system. Prayers for you.